Mitigating the challenges of living with autism

Training programmes and awareness campaigns can go a long way in helping children with autism. But when it comes to integrating them into society, a lot more needs to be done on an institutional level.

According to a recent study conducted by the INCLEN Trust International, a non-profit research organisation based in Delhi, one in 100 children in India under the age of 10 suffers from autism spectrum disorder or ASD. The condition is defined by a variety of various debilitating behavioural and social symptoms.

Children with ASD find it difficult to interact with people, as well as to effectively communicate their feelings through language or gesture. This poses a huge challenge for educationists working in this field. In a country where mainstream schools are far from being ASD-friendly, what can be done to provide basic education and communication training to children with autism?

That was the question Nitin Bindlish, founder and CEO of Mom’s Belief, began with. His organisation offers home coaching to children with ASD, with tailor-made programmes that go beyond basic education, into the realms of speech therapy and psychiatric counselling. Bindlish’s training modules incorporate monthly checkups of kids by psychologists, paediatricians and other professionals.

“The Mom’s Belief home programme helps children with ASD by empowering their parents with knowledge, guidance and resources. A dedicated psychologist completes a neurodevelopmental profile of the child and creates monthly Individualised Education Plans (IEPs) that advance the child’s skills. Speech therapists, occupational therapists, special educators and developmental paediatricians also contribute to plans for the child,” Bindlish told Guardian 20.

The process of designing IEPs differs from child to child, depending on the analysis done by the psychologist. “The IEP is a comprehensive neurodevelopmental profile. Our child psychologist completes this profile with the parents using the child’s medical history and a skill-and-development assessment,” he said.

At present, Mom’s Belief is offering home programmes in 114 cities across India, and it has recently extended its services to small towns and villages as well. “Our home programme is especially helpful for families in smaller cities and rural areas, as there aren’t enough psychologists, speech and occupational therapists and special educators in these areas. We have developed thousands of hands-on teaching tools, as well as educational worksheets, activities, strategies and techniques to help develop the skills of children with ASD and other developmental disorders. Our teaching tools also help in developing self-help skills, like getting dressed; and life skills, such as understanding money and how it’s used,” added Bindlish.

Though people like Bindlish are trying their best to contribute to the cause of social integration of autistic kids, India still lacks proper schools and treatment centres that cater to ASD cases.

Dr Archana Nayar, founder of the Autism Centre for Excellence (ACE) in Delhi, pointed out the significant gaps in terms of the available educational facilities for children with autism in India. “There is also a lack of standardised systems for intervention within schools and centres, which leads to unequal quality in therapy. Mainstream schools must provide teacher-training to support their staff in the management of those with differing abilities. In an inclusive classroom, where each teacher is responsible for 25 or more students, it’s imperative that they are taught how to understand a student’s behaviour and the best way to deal with it.”

She added, “Consistent teacher training specific to special needs is missing within regular classrooms. In most mainstream schools, remedial services are provided by specialists outside the classroom. This is an incomplete form of integration and does not lead to desired progress either.”

ACE was founded with the multi-pronged approach of “providing standardised science-based therapy to students, to promote and support teacher-training programmes and to create outreach and awareness in society to reduce the stigma attached to mental health conditions”.

Dr Nayar explained ACE’s individualised educational plans that take into account the child’s ability when it comes to skill development. She said, “The intervention methodology used at ACE is Applied Behaviour Analysis (ABA). This science is based on the principles of behaviour modification and positive reinforcement. The individualised educational plan is based on an initial baseline assessment of skills and abilities of each child, after which goals in the domain of behaviour, life skills, communication/speech and academics are built, based on the child’s ability.”

Dr Nayar also talked about the need for greater ASD awareness in society. She said, “Society as a whole perhaps needs more sensitisation towards mental disability—this can be done by more awareness campaigns, educating people and by community-building activities… Parents’ perception has evolved over the years—now we see more informed and educated parents from all over India, who seek early diagnosis of concerning signs and symptoms. This leads to early intervention and thereby a better outcome for the child. In the last 5-7 years, we have seen that diagnoses that occurred at an average age of five years are now happening as early as two years of age.”